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The PDF Story

By Dr. Lewis P. Rowland

For more than half a century, the Parkinson’s Disease Foundation (PDF) has worked to explore the science of Parkinson’s, to advance treatments, to provide information and support to individuals and families, and to envision a world in which Parkinson’s disease can be consigned decisively to its rightful place in the graveyard of medical history. 

PDF was created in 1957 by William Black, founder of Chock full o’Nuts, a successful New York coffee and restaurant business.  Mr. Black was a powerful personality.  When his company controller and close friend was diagnosed with Parkinson’s, he was appalled to learn that no truly effective therapy was available, and no basic research was being conducted on the disease.  With his own money, Mr. Black set up the Parkinson’s Disease Foundation with a single goal: to establish a research program aimed at finding effective drug treatment for the disease. 

To accomplish this, Mr. Black made two major gifts to Columbia University: one to help build the research laboratory building that now bears his name and houses one entire floor dedicated to Parkinson’s research; the other to endow support for that research.  This close relationship between PDF and Columbia persists to this day.  

The Columbia connection: Building on a great foundation

The importance of Columbia to PDF and to the Parkinson’s disease community goes far beyond its role as PDF’s scientific authority.  Through its programs of post-graduate education and training of physicians and scientists, it has turned out generations of leaders of other Parkinson’s disease and movement disorder programs in the United States and more than a dozen other countries. 

Columbia’s movement disorder program has been a leading participant at the major milestones in Parkinson’s science over the last 50 years — beginning with the university’s involvement in the early trials of levodopa, the “miracle drug” that transformed the treatment of Parkinson’s in the late 1960s, and continuing through the university’s role as one of the world’s leading laboratories devoted to studying cell death.  This success would not have been possible without the involvement of PDF and its thousands of supporters who have contributed a total of almost $50 million to Columbia’s program since 1957.

Since the beginning, Columbia’s scientific leaders have provided guidance and direction to PDF’s research programs.  PDF’s first Scientific Director was the late Dr. Melvin D. Yahr, the formidable Parkinson’s scientist.  In 1973, Dr. Stanley Fahn, the current leader, assumed this role.  Dr. Fahn holds the H. Houston Merritt Professorship of Neurology at Columbia University and directs the university’s Center for Parkinson’s Disease and Other Movement Disorders.  He is widely regarded as the leading figure in the Parkinson’s community worldwide. 

Meeting the needs of patients and families

In the late 1970s, PDF implemented a new dimension to its programs: using the platform of Columbia’s scientific authority as a base for the creation of a program of information and support for patients and their families. 

In 1994, PDF staged the first-ever conference on “quality of life” in Parkinson’s disease.  This event helped pave the way for a new view of Parkinson’s disease as being not just a disorder of the motor system, but rather a complex disease that affects many parts of the body.  This new view, now widely accepted, recognizes that successful management of the disease requires the deployment of a whole new set of therapeutic strategies, from exercise, to lifestyle adjustments, to support.

Creating a partnership in Chicago

By the mid-1990s, PDF was ready for new challenges.  Among them was arranging a merger with the United Parkinson Foundation in Chicago.  One product of this merger was PDF’s inheritance of a relationship with Rush University Medical Center, the leading Parkinson’s center in the Midwest.  Today, PDF annually provides a dollar-for-dollar matching grant of up to $300,000 towards Rush’s exemplary Parkinson’s disease research program.

PDF today: Vision, programs and activities

Today, PDF builds on a tradition of scientific authority and a commitment to patients and families to create a vision for the future that is rooted in good science and propelled by a deeply-held perception of human need in the Parkinson’s community.  Although supporting research at Columbia still holds the highest priority, the Board of Directors has led the organization into other important fields including fellowship programs to train the next generation of investigators; collaborations with the Parkinson Study Group and the American Academy of Neurology; information and education programs for patients and families; a Parkinson’s clinical trials awareness program and advocacy programs that champion the interests of the Parkinson’s community.

We are proud that PDF has become such an active organization in the search for the cause, amelioration, prevention and treatment of Parkinson’s disease.  We think Bill Black would also be proud.

Dr. Lewis P. Rowland has been President of the Parkinson’s Disease Foundation’s Board of Directors since 1979.  He is Professor of Neurology at Columbia University and was Chairman of Neurology and Director of the Neurology Service at Columbia from 1973 until 1998.